Maintaining Wellbeing With Prostate Cancer

The following has information about important issues to help you maintain positive wellbeing when you have been diagnosed, or having treatment or after being treated for prostate cancer. Its aim is to provide you, your partner, family and friends with information on some of the emotional challenges men with prostate cancer can experience. You can use this as a guide to further discussions with your doctor and other health professionals about your situation.

In Australia, prostate cancer is the most commonly diagnosed cancer in men. It is estimated that in 2014, about 21,000 Australian men will be diagnosed with prostate cancer, accounting for approximately 30% of all new cancers in men.

This booklet has information about important issues to help you maintain positive wellbeing when you have been diagnosed, are having treatment or after being treated for prostate cancer. Its aim is to provide you, your partner, family and friends with information on some of the emotional challenges men with prostate cancer can experience. You can use this as a guide to further discussions with your doctor and other health professionals about your situation.

Your cancer journey

After being diagnosed with prostate cancer, it’s common for you to see a number of health professionals with different expertise who work together as a team, called a multidisciplinary team (also known as a healthcare team). Best practice treatment and supportive care for people with cancer involves a team of different health professionals. Each team member brings different skills that are important in managing care and in making decisions around your individual needs. The team includes health professionals who are involved in diagnosing your cancer, treating your cancer, managing symptoms and side effects, and assisting you with your feelings or concerns during your cancer journey.

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer. Depending on your stage of prostate cancer and other underlying conditions, your experience may be quite different to somebody else’s.

As the diagram ‘Your cancer journey’ shows, it can be useful to think of the journey in stages that may include detection, diagnosis, treatment, follow-up care and survivorship. For some, it may include end of life care. Take each stage as it comes so you can break down what feels like an overwhelming situation into smaller, more manageable steps.

The cancer journey is your personal experience of cancer. It’s not the same for everybody, even with the same type of cancer.

Your reactions and emotions to a prostate cancer diagnosis

For many men, a cancer diagnosis has a profound emotional effect. It may be one of the most stressful life events you ever experience. The diagnosis can come as a real shock because prostate cancer commonly isn’t accompanied by any symptoms or indications that something is wrong. Common reactions men can experience are:

shock

fear

anger

anxiety

confusion.

Many things may influence your reactions, for example:

Previous experience with cancer, for example, a family member or friend’s cancer experience.

A feeling of anger or unfairness that this has happened to you at a particular stage in your life.

Sadness for your partner, family, or those who are close to you.

‘ You don’t hear too much after you’ve been told by the urologist that you’ve got prostate cancer, your head is just in a whirl.’

You might feel so overwhelmed by these emotions that it seems like you’re losing control. These are typical or normal reactions to an extremely challenging situation.

Prostate cancer can be challenging in a number of ways:

A cancer diagnosis can raise questions about your survival.

It challenges your way of life, raising questions such as, “Will I be the same person as before?” or “Will I be able to do the same activities?”

Prostate cancer treatments can affect erectile function and continence. This has the potential to challenge your sense of masculinity, self-identity and sexuality.

Cancer can also affect your usual roles. For example, the jobs you do around the house may not be possible for a period of time if you are recovering from surgery, or you may have to take extended time away from work, which can impact on how you feel about yourself.

There is no right or wrong way to react or feel – each man will have his own individual way of reacting and coping.

Talk to a member of your healthcare team (e.g. cancer care nurse or your General Practitioner (GP) about your feelings or for referral to someone who can assist you with managing your feelings.

‘ When I was diagnosed with prostate cancer I was in total shock’

Identifying and managing distress - the role of your healthcare team

As mentioned earlier, after being diagnosed with prostate cancer, it’s common for you to see a number of health professionals with different expertise who work together as a team, called a healthcare team. These health professionals will provide you with a range of support and care throughout your cancer journey. The healthcare team, when appropriate, will also provide support to others who are important in your life (e.g. partner, family and friends).

Your healthcare team is committed to caring for you emotionally as well as physically. During stages of your cancer journey you may be asked how you and your partner, if you have one, are coping emotionally.

Sometimes it can be difficult to put into words how you are feeling. A member of your healthcare team (e.g. cancer nurse) may discuss how you are coping and ask questions about your level of distress. The Prostate Cancer Distress Screen (Click here to view) is an example of a distress screening tool that they may use to do this.

The screening tool asks you questions about common problems you may be experiencing during your cancer journey. The information you give may help you and your healthcare team identify areas where you may need help and support.

Screening for distress is an important part of caring for you and those close to you in your cancer journey.

While many men feel their initial strong emotions improve with time, for some, these emotions can be ongoing and begin interfering with their everyday life.

If you feel that this is occurring to you, talk to members of your healthcare team (e.g. GP, psychologist) who can provide you with the necessary support to manage distress you may be experiencing.

Who can help?

Your GP can be a good starting point to seek help because he or she knows you and your individual situation. Your GP can provide support, information and refer you to other healthcare team members when necessary.

If you don’t have a regular GP, talk with members of your healthcare team about support and information you may need.

The following healthcare team members specialise in the emotional aspects of your care:

Social Worker: Advises on support, practical and legal matters, and provides strategies to cope with emotional, social and spiritual challenges.

Sex Therapist: Help with sexuality issues by identifying the level of sexual functioning available, and enhancing sexual and relationship functioning.

Caring for your emotional and social wellbeing during and after treatment is as important as the physical treatments you may receive, and leads to more positive outcomes for you and those close to you.

‘ Well it’s hard because the word cancer still sounds like a death sentence. It’s not these days but it still has psychological effects.’

Helpful strategies for making treatment decisions

Just as you’re coming to terms with the emotional impact of your diagnosis, you may be faced with a difficult choice between several different treatment options. This can be a very challenging stage of your journey, and the time at which you may require the most support. If you have a partner, it is important to include them at this stage as prostate cancer treatments can have personal side effects that can impact on them too. Making your partner part of the decision-making process will help both of you cope during and after receiving treatment.

Take your time: You usually don’t have to make a decision about treatment right away. Discuss with your healthcare team a suitable timeframe to make treatment decisions.

Gain information: Seek further information about your prostate cancer and treatment options from reliable sources (see suggestions at the back of this booklet or information booklets from your healthcare team). There are numerous sources of information on the internet, however not all of it is reliable or relevant to you and your situation.

Talk: Talk to healthcare team members involved in your care. Prepare yourself with questions before appointments and write down the answers so that you can review them later. Some men find it useful to keep a diary of their notes and appointments as a strategy for coping with all the information they are receiving.

Ask: Ask for extra information or further explanations if you are unsure about what you have been told.

Support: Take your partner or someone close to appointments to provide both support as well as another pair of ears. This can be useful when trying to remember what was said clearly.

Support groups: PCFA has established prostate cancer support groups all around Australia. Support and advice can be received from men who have been in the same position as you. This can include phone support. To find your nearest group, visit www.pcfa.org.au/support/list-of-support-groups.

Pros and cons: When you are presented with more than one treatment option, some men find it useful to write a pros and cons list. This allows you to look at the positive and negative aspects of each treatment option and how it may impact on your individual situation. You may wish to include your partner.

Second opinion: It can be valuable for you to get a second opinion about your treatment options. Talking it through with another doctor or health professional who understands prostate cancer can help clear up some concerns you have, and help you understand the best treatment option for you.

Prostate cancer treatments can have personal side effects, for example:

It is important to seek information and establish expectations of how your individual treatment will affect your continence, and sexual and erectile function. Preparing yourself before treatment can contribute greatly to coping with side effects afterwards.

PCFA has resources on side effects of treatments for prostate cancer. For further information, please see www.pcfa.org.au/awareness/.

Tip: Develop a list of questions for your healthcare team on what side effects to expect following treatment.

When you are presented with more than one treatment option, some men find it useful to write a pros and cons list.

Coping strategies during your prostate cancer journey

There are key times in your prostate cancer journey when you may feel more emotional or stressed. Recognising these times can allow you to prepare for how you will cope. Some of these stages include:

when you are first diagnosed

following treatment

when you are experiencing side effects such as erectile dysfunction and incontinence

You probably already have ways of coping with difficult situations or decisions that have worked for you in the past. For example, some men may talk through problems with people they trust such as their partners or close friends, or may distract themselves from an unpleasant thought or situation. Understanding what strategies usually work best for you can help you cope with the challenges a cancer diagnosis may bring.

However, sometimes your usual strategies may not help you cope with all the challenges of cancer. If you feel that your usual coping strategies are not helping, talk with members of your healthcare team (e.g. psychologist, social worker, GP) for further information or support. You may find the following strategies helpful:

Be informed about your prostate cancer

many men feel more in control and that they can manage more easily if they have understanding and knowledge of their situation.

Tip: Gather information from your healthcare team or from reliable information sources. Take your partner or a support person to appointments.

Be organised about your cancer journey

you may be experiencing a range of strong emotions; being organised can help you think more clearly and avoid being overwhelmed.

Tip: Keep a diary of your appointments, treatments, and side effects. Write questions for your healthcare team before appointments; write the answers for future reading.

Communicate and build a good relationship with your healthcare team

openly discussing your concerns can assist in a more manageable journey.

Tip: If you don’t feel comfortable talking to a certain team member, ask to see someone else. Talk about problems you may be experiencing, for example, difficulty sleeping, low mood, feeling stressed or anxious.

Looking after yourself

The better you care for yourself, the better you will get through the emotional and physical challenges you may experience. Strategies for looking after yourself include:

Eat well: Provides the energy and nutrition required through treatment.

Exercise: Regular exercise can assist in preventing tiredness and fatigue, lift your mood, and help you to sleep. (Note: discuss with your healthcare team the level of physical activity that is okay for you, depending on your dividual situation.)

Talk: Don’t block your emotions or reactions, as this can lead to further anxiety or frustration. Discuss your feelings with someone close, this may help you cope and make sense of your situation.

Time out: Take time out from cancer wherever possible; undertake social activities and hobbies you previously enjoyed.

Rest and Relaxation: Rest is as important as exercise, particularly during treatment and just afterwards. Relaxation exercises or techniques such as meditation can assist in managing stress. Talk with your healthcare team for information about relaxation exercises or techniques.

Discuss your feelings with someone close, this may help you cope and make sense of your situation.

Coping with anxiety and depression

Some men find that coping with their prostate cancer may lead to ongoing problems with managing their emotions, to the point it becomes difficult to continue with their normal daily activities or they become physically unwell.

Anxiety:

Anxiety is the word used to describe thoughts, feelings and physical reactions people have when they are faced with an event or a situation they feel they can’t manage. Some signs of anxiety include:

avoidance behaviour

racing heart

restlessness

trembling or shaking

difficulties with concentration or sleep.

Depression:

Depression is a common problem in the community, and the rate of depression is higher in men with prostate cancer. Some signs of depression include:

always feeling in a low mood

no interest in usual activities that you previously enjoyed

difficulties with sleeping and eating.

Anxiety and depression can make coping with the physical side effects of your prostate cancer treatment more difficult. These are common reactions for which there are many sources of help and support, as well as effective treatments. If you suspect you may have either anxiety or depression, discuss with your healthcare team so they can provide you with coping strategies to assist in dealing with these feelings, or refer you for further help.

Sometimes the strategies you use to cope may be unhelpful. If you use them over a period of time they can worsen your emotional wellbeing. Examples of unhelpful coping strategies include:

avoiding your problems

blaming yourself

using alcohol or drugs

gambling

overeating.

The section ‘Support services and other resources’ lists services and helplines where you can get assistance.

‘ Depression is another side effect of prostate cancer that doesn’t get spoken about.’

‘A lot of people just weren’t listening to me. I’d come home and sit down and something would be annoying me… you just go into another world’

Getting support

PERSONAL SUPPORT

Whether getting personal support from your partner, family members, a friend or a support group, their support can help you cope with the challenges of prostate cancer.

Just as prostate cancer can raise many issues for you, if you have a partner, your partner may also be worrying about how prostate cancer will affect your life. The side effects of treatment such as impotence and incontinence can affect your relationship. You and your partner can discuss these personal issues with your healthcare team.

‘ …the effects [prostate cancer has] on the whole family … it’s not isolated. As I tell people, I suffer with prostate cancer, not that I’ve got it but as a partner of someone that has.’

Every man will have different ways of dealing with prostate cancer and need different levels of support. The following sections discuss where to find further support.

PROFESSIONAL SUPPORT

‘ I received no information on this [emotional wellbeing]. This was one topic I felt I would have benefited from having information on during treatment.’

There are many forms of support available to you. Your healthcare team can provide you with support and advice. If you feel you would benefit from talking to someone or having some additional help, talk to a member of your healthcare team.

The Better Access initiative allows you to get Medicare rebates for selected mental health services offered by GPs, psychiatrists, psychologists, and eligible social workers and occupational therapists.

FINANCIAL SUPPORT

Cancer can have financial implications too, such as the cost of certain treatments, or the cost of having time off work, leading to loss of income.

The Department of Human Services provides payments and services to help you if you have an illness, injury or a disability that means you cannot work, or can only do a limited amount of work.

Medicare covers some of the costs of procedures and tests used to diagnose and treat prostate cancer, but there may be some ‘out-of-pocket’ costs. Your doctor or a member of your healthcare team can answer your questions about why you need certain procedures and tests, and the potential financial outlay.

Each State and Territory has a governmentfunded scheme to help patients who have to travel long distances to obtain specialist treatment that is not available locally.

Some organisations listed in the ‘Support services and other resources’ section can provide you with more information on financial assistance.

SUPPORT GROUPS

It is important to remember you are not alone – there are established prostate cancer support groups all around Australia. Support and advice can be received from men who have been in the same position as you and this can provide a powerful way of coping.

Being part of a support group can help you experience:

a sense of belonging

a sense of community

feeling as though you are not alone

feeling accepted and supported

empathy

feeling understood

feeling as though you are being cared for

feeling safe to express your feelings and fears.

For more information on support groups or to join a support group, see the Prostate Cancer Foundation of Australia website www.pcfa.org.au/support/.

Support at end of life

Sometimes prostate cancer becomes more advanced and treatments may become less effective.

Many people think palliative care is only for people who are dying, but in fact palliative care involves any treatment for cancer that helps to relieve symptoms and improve day-to-day life. Many people are reluctant to discuss palliative care with their healthcare team or their family and friends. But this means they might miss out on important and valuable care and support during this part of their cancer journey.

Palliative care professionals can help you with:

symptom management (e.g. pain and other uncomfortable symptoms)

making difficult medical decisions

coordinating care with other health professionals working with you

emotional support.

Treatment choices at end of life can vary depending on your situation and what is important to you. Some people may choose to stop all treatment and others may base their decision on what will offer them the best quality of life. For many people, worrying about what will happen to their surviving family members is difficult. Planning ahead to settle legal, financial, and business affairs also allows you and your family to concentrate on the emotional aspects of your illness and its effect on your family.

Your decisions are personal, although you may like to discuss them with someone you trust (e.g. your partner, a family member or friend). Make sure your treatment wishes are known. Starting the conversation early strengthens your relationship with the healthcare professionals (e.g. your GP or another member of your healthcare team) who are working with you, and enables them to provide you with the information you need, to give you the best care possible, and to ensure you are treated with dignity.

Palliative care involves any treatment for cancer that helps to relieve symptoms and improve day-to-day life.

Support services and other resources

Listed below are some of the leading organisations and services that can provide you with accurate information about prostate cancer and psychological support.

Talk It Over: Men’s Line Australia – providing professional telephone and online support, information and referral service, helping men to deal with relationship problems in a practical and effective wayTel: 1300 789 978Website: www.menslineaus.org.au

Advanced prostate cancer - Prostate cancer that has spread to surrounding tissue or has spread to other parts of the body.

Cancer - A term for diseases in which abnormal cells divide without control.

Cultural engagement - Actively involve people with respect to their cultural needs.

Localised prostate cancer - Prostate cancer that is at an early stage and is still contained within the prostate gland.

Locally advanced prostate cancer - Cancer which has spread beyond the prostate capsule and may include the seminal vesicles but still confined to the prostate region.

Metastatic prostate cancer - Small groups of cells have spread from the primary tumour site and started to grow in other parts of the body – such as bones.

Multidisciplinary care - A team approach to cancer treatment and planning.

Palliative care - An approach that improves the quality of life of the person and their families facing problems associated with a life-threatening illness. Prevention and relief of suffering is provided through early identification and assessment and treatment of pain and other problems such as physical, psychosocial and spiritual.

Prognosis - The likely outcome of a person’s disease.

Prostate cancer - Cancer of the prostate, the male organ that sits next to the urinary bladder and contributes to semen (sperm fluid) production.

Prostate gland - The prostate gland is normally the size of a walnut. It is located between the bladder and the penis and sits in front of the rectum. It produces fluid that forms part of semen.

Prostate specific antigen (PSA) - A protein produced by cells in the prostate gland, which is usually found in the blood in larger than normal amounts when prostate cancer is present

Quality of life - An individual’s overall appraisal of their situation and wellbeing. Quality of life encompasses symptoms of disease and side effects of treatment, functional capacity, social interactions and relationships, and occupational functioning.

Self-management - An awareness and active participation by people with cancer in their recovery, recuperation, and rehabilitation, to minimise the consequences of treatment, promote survival, health and wellbeing.

Shared decision making - Integration of a patient’s values, goals and concerns with the best available evidence about benefits, risks and uncertainties of treatment, in order to achieve appropriate health care decisions. It involves clinicians and patients making decisions about the patient’s management together.

Support group - People on whom an individual can rely for the provision of emotional caring and concern, and reinforcement of a sense of personal worth and value. Other components of support may include provision of practical or material aid, information, guidance, feedback and validation of the individual’s stressful experiences and coping choices.

Supportive care - Improving quality of life for people with cancer from different perspectives, including physical, social, emotional, financial and spiritual.

Survivorship - In cancer, survivorship focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to follow-up care, late effects of treatment, second cancers, and quality of life.

Edwards, B., & Clarke, V. (2004). The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients illness characteristics on depression and anxiety. Psychooncology, 13(8), 562-576.